Monday afternoon, I glanced at Facebook while eating my lunch. A friend of mine who also uses a wheelchair had posted the following, which I am sharing with his permission. I have edited to protect the privacy of everyone involved:
“I just received word that my formal medical appeal to my insurance for my wheelchair has been approved. A bit of history:
I took delivery of my custom ultralight wheelchair last July. My claim was denied by insurance as the wheelchair was deemed medically unnecessary. My provider has been amazing in not sending this to collections and working with me on the $8,000 outstanding bill, even though the invoice is now 9 months old. They have held billing as they knew it was in appeal, and have not sent me past due notices.
With the help of a retained third party, I sent my insurer a packet of medical documentation (over an inch thick!) and crafted a letter with professional legalese accompanying the documentation explaining the provisions they needed to follow, and demanding a neutral board certified neurologist familiar with my condition assess the records.
Thirty days after receiving my letter, they decided they are going to pay after all. I’m grateful for all of the assistance of my third party advocate (he is a former claim reviewer, an attorney, and I could not have done it without him, truly), my equipment provider for holding onto the billing, and my physician office in assisting with medical documentation.
HOWEVER…I am very saddened and disappointed by the state of our healthcare reimbursement system. This is my EIGHTH ultralight chair, I have an incurable genetic condition, and will not see a cure in my lifetime. It is not like my need has, or will ever, change. It took all of my brain power to navigate the spaghetti of the appeal process, and I have three college degrees, am a business executive, and have over six years of experience managing medical insurance programs at large Fortune 500 companies.
If it has taken me nine months, and the assistance of outside professionals, while personally quarterbacking all of the players, what hope does the average person on the street have?
I’m very grateful by the resolution, it’s a great start to the week. I’m a bit disheartened though, as I’m reminded there are many people, with needs far greater than mine, facing equally complex up hill battles, but with not nearly the resources I can bring to bear to resolve them. What of their needs?”
His post struck a chord with me because my Monday morning started with a trip to the doctor. Not because I was sick – well, that’s really not true. I was sick last week and spent several days home in bed with a bad cold and laryngitis. But on Monday morning, I was feeling the best I had felt in a week.
The trip to the doctor was made for one reason: the government made me go. The government makes me go to the doctor every six months to prove I still have a disability.
I rely on a Medicaid-funded (read: funded by tax dollars) program for the personal care I require to live independently in the community. Since I use a publicly-funded program, there are rules. One of the rules requires me to see my doctor every six months. I call it the “prove I’m still disabled” appointment.
I go to the local medical center. I always make an early morning appointment so I can go before work when I have more energy. The nurse takes my blood pressure (114/74) and my temperature (97.4 F), talks to me about preventive screenings and verifies my information is still accurate. The doctor comes in and asks me if anything has changed since my last visit. We discuss life and my health. Monday we talked about Australia. She takes the form certifying my continued need for home care and asks when the completed form must be returned to the local Department of Social Services. During the October visit she performs my annual physical. I make an appointment to return in six months and leave for work.
Every. Six. Months. Whether or not I am sick. Since I began using the program in 2008, I have never been sick for one of these visits.
I have a progressive neuromuscular disability. My need for continued home care has not magically gone away. There is no magic pill I can take to make my mobility impairment disappear. But I have to prove I need assistance and because I am dependent on the program, I resign myself to playing the game.
People with disabilities are used to justifying their needs for adaptive equipment, medical treatment and services. My friend had to prove his need for his specific wheelchair. I have had to do the same, and also justify my continued need for home care.
Why? I suspect it is because somewhere there are people who are telling lies and committing fraud. And the insurance companies are businesses that want to make a profit so they have decided they will save money by making it difficult to access care, services or technology. If they make it difficult and deny a claim, maybe the patient won’t appeal and will just pay it.
I don’t have data to back up that claim. It’s just my opinion, as someone experienced in the game. Much like my friend, I anticipate I will be required to prove my need. I give my doctors specific examples when we are discussing my care so they can use the language in their reports and letters. My friend engaged a third party to assist him in his appeal and it took him NINE MONTHS to get approval for his chair.
A wheelchair is not a toy. It is not an accessory which is convenient to have. Those of us who rely on Personal Assistants literally cannot live or function without them.
My friend’s insurance company thought his independence was not worth $8,000. If my friend does not have access to the chair he needs, he will not work, he will not independently go shopping, do his laundry, make his own meals or any other activity of daily living.
The invoice for my wheelchair listed the value at $33,647. I am pretty sure my insurance company paid a reduced price, but I’m guessing it was still over $20,000.
What is your independence worth? Can you put a price tag on it? Can you prove you deserve it? Should you have to?